Taking Life As It Comes

Monday, June 29, 2009

For the past three months we've been hearing about swine flu constantly on the news and reading about it nonstop in the papers. Not ones to be left out or behind the times, we've tried diligently to catch the flu in an effort to see if it lives up to all the hype. Unfortunately, our efforts failed and we didn't even catch a cold.

Considering that my family attends three separate schools, this was even more surprising. Especially when we found out that Mike's school, our very own Eisenhower Jr High, received the amazing distinction of being the school with the fastest growing rate of swine flu IN THE NATION!!!! Yes! This is no puny city award, or even state award. This is a NATIONAL award. Of all the schools in the nation, swine flu spread the fastest at my husband's place of employment. We were quite proud to be part of this statistic! And alas, we still couldn't catch the Swine Flu.

Stifling our disappointment, we went back to living our lives. This included Mike going on a 10 day trip to Washington DC. Since he was the only one at Eisenhower who didn't catch the flu, by default he was invited to go on a trip back east to some boring history conference. I didn't pay attention to the details. The only thing I paid attention to was the fact that I would be alone with two children for 10 DAYS. Yikes.

As a side note, Mike never has to worry that I'll leave him. Single motherhood is definitely not for me. And if HE ever wants to leave, he's going to have to do some pretty slick bargaining.

So Mike went on his trip and the kids and I settled in for a long winter's nap. Ha ha, just kidding. It's almost 2 am and I know that didn't make sense, but I'm too tired to care.

Actually, I spent the entire time Mike was gone trying to ensure that he'd never leave again. I signed the kids up for swimming lessons. Volunteered Mike for a few babysitting/church cleaning jobs. Got a new kitten. Took the kids to a scary movie (really, it was only UP, but those dogs were pretty frightening!). And, best of all, drumroll please.....

WE GOT THE SWINE FLU!!!!

Yay! All of our hard work from the previous month finally paid off. We got the flu and got it good. Well, actually I got the flu. The kids seem to have miraculously avoided it, although it looked like they were showing signs too. And all kidding aside, it's wonderful that they managed to avoid it. This is not something I'd wish on them. Even when they decide to paint the new kitten's tail green "just to see what would happen."

So far I have to say that the flu ain't all it's cracked up to be. Of course having said that I'm fully expecting to end up in the hospital. But for now, at least, it hasn't been that bad. Sure there were a few hours when I just wanted to die. But they passed, and since then it hasn't been much worse than a bad cold. And hopefully this means I'll be immune when the swine flu mutates and hits us this winter. Yippeeeee again!

Mike comes home tomorrow. Other than when the 5-inch wide spider crawled out of a hole in the brick outside our house blocking my entrance and causing me to scream for a full 3 minutes, I have never been more excited to see my wonderful husband. I plan on handing him the reins, climbing into bed with a good book, and locking the door for about 3 days. I've stockpiled honey nut cheerios, chocolate, and diet Coke, so my nutritional needs are taken care of. And I've created a rope ladder so if I need to leave I can just use the window.

I'll leave him to deal with the new kitten, too. His official name is Jedi Edward Door Ding. I would explain, but instead I'll leave you to guess.

In fact, this sounds like a fun contest. Whoever correctly guesses the origin of each name will get a fabulous prize. And I promise it won't involve Swine Flu.

Tuesday, June 16, 2009

Over 2 months ago I posted that I wanted to write about Kaitlyn's baptism. And I do. The problem is that every time I sit down to type, I start sobbing so hard I can't see the computer screen. So I could post a blog full of typos and water spots, but instead I think I'll wait until I can write with just a BIT less emotion, since not even I can stand myself when I'm so sappy I can't think straight.

Friday, April 3, 2009

I think anyone who has spoken to me at all in the past 6 1/2 years knows the stories about my daughter and our adventures with 18q-. For those who don't, I'm going to give a brief overview. Those who do feel free to skip a paragraph or two.

When she was 18 months old, our daughter Kaitlyn was diagnosed with a rare chromosomal abnormality called 18 Q Deletion. This means that while most people have two complete copies of the 18th chromosome, Kaitlyn has one complete 18th chromosome and one that's missing a piece. She is missing several genes on that piece; some that have been identified and some that haven't.

Since our chromosomes are in every cell in our body, this causes problems with every cell in her body. Some genes are more important than others, so some of her problems are more impactful, such as her delayed myelination, growth hormone deficiency, hearing loss, learning delays, and social delays. Dealing with these challenges (and many others) has been difficult and has caused much sadness and heartache.

Most parents take it for granted that their children will learn to roll, sit, crawl, cruise, walk, run - these things just happen in the normal course of growing up. Of course there are no guarantees, and each child reaches milestones when he or she is ready. But for the majority of children, milestones are met within a normal time frame, in a typical manner, with minimal effort on the part of the parent and child.

We are not allowed the privilege of taking things for granted. Our daughter works much harder than most children in her attempt to reach each milestone. I say this with pride - yes, unrighteous pride - in my heart for her bravery, strength, and determination. While she took her first independent tottering steps at the age of 14 months, it wasn't until over a year later that she was walking with any kind of confidence. While it was difficult for her (and for me) to get on a special education van at the age of three and ride an hour across town to get to school, she did it every single day with a smile on her face and an eagerness to explore what the new day would bring. While she doesn't like going to the doctor 4 times a month and having at least one surgery per year (here's to 2009 - hopefully her first surgery-free year since 2004!), she does it anyway with a trust and acceptance that tears at my heart. And while life is definitely more difficult for her than it would be if she were not encumbered by the physical challenges she faces, she never, ever, ever gives up.

So along with the sadness and heartache, and yes, I'll admit it - the grief, we also get to experience something most parents never do. We get to feel the unsurpassable joy and happiness that comes from never taking anything for granted. We get to understand what a miracle it is that putting one foot in front of the other allows you to reach your destination and achieve your goals without needing help from anyone else. We get to see the smile - that beautiful, brilliant smile - that means she knows she has worked hard and that she is proud of what she has accomplished. We get to listen to this precious girl read to us every day. This child, who we were told would most likely be averbal, reads and loves books and begs for more.

In short, we get to experience things that parents of typical children not only don't get to experience, but in fact can't even understand.

I say all this in preparation for blogging on Kaitlyn's baptism. It was a day we did not know would come. Something we couldn't take for granted. Something that was most likely completely unnecessary. And something more beautiful and joyful than we ever dreamed possible.

Here's to our amazing daughter and our wonderful life. I love you, Kaitybug.

Sunday, March 29, 2009

About two weeks ago I began taking a medication called Topamax. I've had horrible migraines for a few years now and they're getting worse as I get older, so I finally made a trip to the doctor and got something that would prevent them from coming. I was so excited at the idea of being migraine-free and would have taken just about anything. I read through the side effects and although there were some really scary ones (mainly dealing with vision), the chance of having one of the side effects was so small that it was worth the risk.

Well, Wednesday morning (March 25) I woke up and noticed something was wrong. After several puzzled minutes where my brain wouldn't wrap itself around the fact that I wasn't seeing very well, it slowly dawned on me that everything was very blurry. And not just blurry. When I was in the living room, I couldn't even see the TV, and wouldn't have known the couch was a couch if I hadn't put it in there myself. I sat down and called up the stairs to Mike, asking him to come down. I explained that I couldn't see and asked him if there was anything unusual about my eyes. He said they were dilated and puffy and looked "odd" (thanks, dear). I told him I couldn't see and asked him to stay home from school so he could help me get to the doctor.

I made an appointment with my GP, who sent me to an opthalmologist. The most frustrating thing of all, even more frustrating than not being able to see? HE DIDN'T BELIEVE ME. Even after using his little machine thingy to determine what my prescription was, he didn't believe that I had gone blind overnight. He kept asking about anything I might have done to my eyes (while I was sleeping between midnight and 6 a.m., I might add). He measured the pressure in my eyes about 10 times (no joke) with this stuff that stung and stained my eyes and face yellow. After about a half an hour, the only thing he could think of was that I had uncontrolled diabetes and it had caused my vision change. Oh, and I forgot to mention that I developed glaucoma sometime during that 6 hours while I was asleep. So during that brief time, my vision went from -1.75 to -9.0 (both eyes) and I developed a horrible case of glaucoma. I tried really, really hard to convince him that I didn't have diabetes, and asked him to consider that it might be a side effect of the medication I was taking. He refused to consider that and sent me home with some eye drops and an order for blood tests that would prove I had diabetes.

I went home frustrated, angry, and scared to death. It's hard to explain what goes through your head when you're worried that you may never be able to see your children again, or drive a car, or read a book or sew or use the computer or any of the other things I love to do. I asked for a blessing, and the first of several miracles occurred. Mike called our home teacher and asked him to come over to assist. During our conversation, he suggested I go to the Moran Eye Center. I hadn't considered that because I thought it was tied to the University Hospital system, which isn't covered by our insurance. He said he thought it was covered by IHC, and that I should call them immediately and get in asap. Of course it was about 7:00 at night, so I had to wait until the next morning. But through all of this I think part of me was assuming I'd wake up in the morning and my eyesight would be back to normal and all of this would be a bad dream. I mean, what other alternatives were there? People just dont go blind overnight! That's ridiculous!

The next morning I woke up to this:

and this:

and this:

Pretty cute, eh? Luckily I couldn't see myself, because that would have taken me from scared to full-blown panic attack. I waited nervously until the Moran Eye Center opened, then called to ask what the heck to do. I talked to the nurse, who at first assumed I had been taken care of by the opthalmologist I had seen the day before, mainly because of how he was treating me for glaucoma. He was treating me for the chronic old-age glaucoma, but the glaucoma caused by Topamax is acute and called narrow-angle glaucoma. The nurse said there would be no way to mistake between the two different types of glaucoma, so if the opthalmologist was treating me for one, that must be the one I had, and therefore I wasn't having a side effect of the medication. Hope that made sense. This was EXTREMELY frustrating, because I didn't think I was being treated for the right thing, and I had that little niggling feeling that I really, really needed to see someone soon. The nurse called a couple more times to ask more questions about what was going on but kept telling me to wait until she could figure out who would be best for me to see and that they might not be able to get me in that day. After her 3rd phone call, I said, "Well, if they can't get me in today, can you suggest someone else who may be able to?" She said, "Let me talk to the doctor and get back to you."

By this time Mike had worn a hole in the carpet and told me to get ready because he was taking me to the ER. I told him to wait a few minutes to see if they called back, and right as I said that the nurse did call back. She said that my symptoms were so puzzling that she didn't want me to wait any longer, so I should go in to the triage clinic and they'd figure out what to do with me after. I scrambled to find someone to take care of my kids (thanks Melanie, Selina, and Karin), and we drove up there to find they were ready and waiting for me.

The nurse took one look through the eye thingy and said, "There is definite narrowing in your angle." Now I'm not a doctor, but this sounded to me like she was suggesting I had NARROW ANGLE GLAUCOMA, not the other chronic kind. She did a bunch of other tests and then walked me to another room to wait for the doctor. And even though there was a waiting room full of patients, the doctor was in my room examining me within 2 minutes.

He quickly determined that I was being treated incorrectly and immediately needed to stop the drops I had been give the day before. He did a bunch of other tests, after which he said that he believed I was, indeed, suffering from a negative side effect from Topamax. And the interesting part? They had another case of this in there TWO WEEKS AGO. Up until two weeks ago, they had NEVER seen a case of Topamax-induced vision loss. The poor woman who ended up being their guinea pig was there for close to 8 hours before they called a neuro-opthalmologist from the U hospital, who happened to be writing a paper on this very phenomenon and was familiar with the symptoms. So thanks to her, they knew what was wrong and how to treat me. That was my second miracle.

So now, 4 days after I woke up blind, I am on the road to recovery and my vision is nearly back to normal. I woke up yesterday morning (which was the day of Kaitlyn's baptism, I might add), and though everything was still a bit blurry, I could make out facial details, furniture, cars, people - more than enough to be able to participate in her baptism. And this morning my vision was even better. I think I will be fully recovered by Wednesday, making my entire ordeal just a week.

I will post later on the newfound gratitude I have for my vision, family, hobbies, etc. For now I want to marvel at the fact that had I gone to Vegas instead of deciding to take this medication, I may have won the jackpot. According to their website, there is a .0025 of 1% chance that I would have had that side effect. Wow! Pretty amazing odds! Which is probably why the first opthalmologist was sure it WASN'T a side effect. Poor guy. He called me on Friday to apologize for not listening to me and promise that from now on he'd listen to all of his patients. I actually feel bad for him.

Anyway, with odds like that, it makes me never want to take another medication again. And it also bums me out, because I don't know if there's anything I can take to get rid of my migraines. :o( But what I am grateful for is the fact that this experience has renewed my testimony of prayer and blessings and home teaching. I can honestly say that my home teacher saved my eyesight, because if he hadn't suggested the Moran Eye Center, I never would have gone there, and they may never have figured out what was happening. If I had continued with the treatment the first opthalmologist gave me, I may be blind now. Instead, my eyesight is coming back, and I have new appreciation for every aspect of my life.

Friday, March 20, 2009

As of 11:05 am on March 20, 2009, THE DRESS IS FINISHED!!!! YIPPPPEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Words cannot adequately express the joy and relief I feel, so instead I'll just dance a jig and shout in jibberish.

Kaitlyn has just kindly reminded me that I'm not Irish so I can't dance a jig (actually, being Irish has nothing to do with it and she knows it), and the jibberish I'm shouting sounds eerily like my sewing words, which I promised I'd never use again. So I better just sit down and be quiet.

Here is the finished product:

Despite the fact that it took 4 months, or perhaps because of it, I am very pleased with how it turned out.

Now I'm not normally one to finish what I start. I have an entire room full of projects that will never, ever be finished in a million years of free Saturdays. I've made peace with this part of myself and know that although I do possess a few desirable qualities (I am a child of God, after all), stick-to-it-iveness is most definitely not one of them. Which is why I found a backup baptism dress clear back on Super Bowl Sunday. While I may be unreliable and, let's face it, lazy, I also don't want to have to pay for more therapy than is absolutely necessary, so I am preventing problems whenever I see an opportunity. This involves making sure my kids have appropriate clothing for important events, or at least for the events at which a camera will be present. Since I now have a camera and since my family pretty much always has a camera, this means I have to be more prepared now than I ever have before. Hence the backup plan for Kaitlyn's baptism dress.

However, let me say it again: I FINISHED THE DRESS!!!!!!!!!!!! It's DONE!!!!!!!!!!!!!!! More than a week in advance and with plenty of time to get pictures taken before the blessed day. This feels so good that it may motivate me to finish the rest of my projects early!

Wednesday, March 4, 2009

Kaitlyn's class made its annual trek to the zoo and I was coerced into going along (Mom? You are going to the zoo right because the teachers want you to and they're dividing us into 4 equal groups [she's working on fractions] and we'll look at all the animals and we have to wear these shoes [points to her tennis shoe-clad feet] because they're comfortable and we're going to walk a lot and we're going to have lunch at the park and we have to bring a jacket but not a big coat and we have to stay with the group and be friends with everyone and not run off and you're coming with us right?).

Seriously, she didn't pause for breath.

After reviving her with rescue breathing, we calmly discussed the fact that I did NOT want to go to the zoo because I hate the zoo. Actually, I calmly discussed it and she ignored me completely. She started in on her plea again and I kindly and gently stopped her by yelling, "Okay, okay! I'll go! Now please start breathing because you have really bad breath and I don't want to have to do that again!"

Yes, I realize that isn't funny but it's after 11 pm and I'm very tired.

Fortunately, last night she was sick with the sniffles and was up off and on all night sneezing, coughing, and wheezing. "Great!" I thought. "She's sick and I don't have to go to the zoo! Yippeee!" Remember, I never professed to be mother of the year.

Unfortunately, she woke up this morning happy, excited, and rarin' to go. No amount of begging on my part swayed her in the slightest ("Come on, Kaitlyn, we'll play Wii all day and watch movies and drink lots of chocolate milk and I won't make you study your spelling words and I'll buy you a pony!"). No dice. So off to the zoo we went.

I'd like to start by saying that Kaitlyn's teachers this year are amazing. A-M-A-Z-I-N-G. They are sweet, kind, caring, firm, flexible, and talented. Great combination. After the train wreck that was last year, we are thanking our lucky stars (and our Heavenly Father) for such a wonderful experience this year.

I mean, last year the teachers wouldn't have wanted me near their field trip with a 10-mile pole. How they couldn't have wanted such a wonderful, helpful, rational, and calm person as myself along to help out is beyond me. Maybe it's because last year I had to become an absolute wee-otch in order to advocate for my child. Those of you who know me are surely saying, "But Stephanie - you could never be anything but wonderful, helpful, rational, and calm! What are you talking about!" But alas, it's true. I was a complete nightmare last year, and I'm proud of it. All kidding aside, I'll do just about anything fair and legal to make sure my children are getting a safe, happy, appropriate education. 'Nuff said.

So the fact that the teachers wanted me to come along was flattering, and the fact that my almost-8-year-old wanted me to come along too was mystifying. Realizing that I don't have much longer where my child will voluntarily share her life with me and that very soon I may be prying things out of her, I decided it was a good idea to enjoy these moments while they last, suck it up, and pretend to enjoy myself.

But this isn't about me, and I digress.

And yes, once again I was pleasantly surprised (see the Lagoon blog from last year). We really did have fun. I even got attacked by a leopard! And my friend got a picture to prove it! Sure there were several inches of glass between us, but that's not important. He sprang right at me with his fangs bared and I jumped backward and screamed like a girl. Good times. She's going to email me the picture, but in the meantime I'll post the pictures of the leopard threatening my baby:

Come to think of it, the cat's aggression could have had something to do with the pack screaming, hyper 8 year olds who were hitting the glass and demanding entertainment. In case you can't read the note taped to the glass, it says:

"This cat is new to this yard. Please be quiet and respectful at the windows while the cat explores and adjusts to this new environment."

What's interesting to me is that the note was taped to the INSIDE of the glass, nearest the leopard with his big fangs and claws and ability to rip the note to shreds, and not on the OUTSIDE of the glass, which would have been nearest the 8 year olds. Obviously the zookeepers of the Asian Highlands recognized the bigger threat.

The bears were also in fine form, kissing and dancing the morning away. The kids pointed out that it is still close to Valentine's Day, so kissing and dancing are still appropriate. I always think kissing and dancing are appropriate (especially in church, where love is so important), so I didn't argue. I also didn't want to burst their bubbles by explaining that they probably weren't kissing and dancing. But who am I to judge? Maybe they were. Pictures:

We were also nearly attacked by a particularly ferocious zebra, who must have been having a bad morning. He reared up on his hind legs (actually, I think I'll call this one a girl since I called the leopard a boy and I have no idea if it was male or female since I was not interested in checking while he was baring his fangs and springing at me). SHE reared up on HER hind legs and charged directly at the camera, emitting a deep snarling growl and baring her front teeth. Luckily my camera was still working after I dried the urine off of it (see the above leopard incident) and I was able to wrap my coat around my waist, enabling me to stay at the zoo to get this amazing picture, which I'm sure will be in every single magazine by Monday morning:

About Me

I'm 30-something and have a husband, two kids, and two cats. Both of our kids have special challenges, and parenting them has been a study in flying by the seat of my pants. I love my husband, my kids, and my life. Most of the time.